Identifying societal perspectives on the relative value of life extending end of life technologies presentation#1/ organised session: Extending life for people with a terminal illness: a moral right or an expensive death – Rachel Baker Professor of Health Economics Yunus Centre for Social Business and Health Glasgow Caledonian University

Phase 1 Research objective Methods Statements Respondent sample Card sort Results Some issues to note

Objectives i.To identify and describe societal perspectives on the (relative) value of end of life technologies by eliciting the views of both members of the public and experts in relevant fields; ii.To develop methods to investigate the distribution of those views, including their association with other characteristics, in a nationally representative sample of the UK general public.

Objectives i.To identify and describe societal perspectives on the (relative) value of end of life technologies by eliciting the views of both members of the public and experts in relevant fields; Qualitative In depth Descriptive - the nature of viewpoint(s)?

Q in brief.... What goes in: People’s rank ordering of statements of opinion Their explanations of why What we do: Look for patterns between those orderings Interpret the patterns What comes out: Factors: rich descriptions of a small number of shared views/ subjectivities on a subject Factor arrays

Q in brief.... What goes in: People’s rank ordering of statements of opinion Their explanations of why What we do: Look for patterns between those orderings Interpret the patterns What comes out: Factors: rich descriptions of a small number of shared views/ subjectivities on a subject Factor arrays

Statement Cards Statements taken from Media review (readers’ comments) 45 articles Public consultation – NICE EoL policy 850 comments from 300 respondents 16 in-depth interviews 3 focus groups (20) Resulted in 49 statements

Example Statements It is not worthwhile devoting more and more NHS money to someone who is going to die soon anyway. Treatments that are very costly in relation to their health benefits should be withheld To extend life in a way that is beneficial to the patient is morally the right thing to do.

Respondent sample 58 purposively sampled, “data rich” individuals Q sort interviews Health/policy professionals, patient groups, charities, hospices, bereaved families, cancer research scientists, pharma industry, health economists, ethicists, religious leaders... (also 250 members of the public)

Analysis Analysis generated a: 3 factor solution F1 ‘Greatest benefit for all, no special cases’ F2 ‘Individual patient perspective - the value of life should be central, not cost’ F3 ‘cost effectiveness, quality of life and patient values’

F1: “Greatest benefit for all, no special cases” NHS spending should aim to achieve the greatest health improvements for the whole population. System level approach Costs and health benefits of treatments have to be considered with those giving the best value for money provided. Aware of budget constraint and opportunity cost. Death with dignity is more important than short life extension.

F1: “Greatest benefit for all, no special cases” We don’t have a right to any/ all treatments. Patient choice for expensive treatments is not supported. Patients with terminal illness do not take priority over other patients who might benefit.

“NHS is always about priorities, and picking priorities is very difficult. People’s personal circumstances may be very different which makes it hard for doctors to choose, but overall health policy has to be decided in a very rational way about the greatest good for the greatest number of people” “money isn’t just money it’s somebody else’s opportunity for easement of pain or suffering or prolongation of perhaps a better quality of life. That money is never infinite so it always means taking it from somewhere else”

Factor 2 “Individual patient perspective - the value of life should be central, not cost”

F2: “Individual patient perspective - the value of life should be central, not cost” Life is precious, to extend life is morally the right thing. NHS spending should reflect the value that patients and families place on the benefits of treatment. (..value does not decline with age) A short life extension for a patient with a terminal illness could mean a great deal to patients and their families. Provides time to spend with families to prepare for death. Rights based arguments at the individual level.

F2: “Individual patient perspective - the value of life should be central, not cost” Rejection that costs should be a reason why treatments not provided. No importance placed on system level health maximisation through consideration of costs and benefits. Provide treatments even if they are not a cure - they are worthwhile. You can’t put a price on life. (we all paid into the NHS so we have rights…)

“I think that if a system such as the NHS is to be truly compassionate, the patient choice and family choice has to be one of the premier things that we consider. And so I think if it is important to a patient to try to do whatever within the realms of being realistic then I think they should have that option” “it has to be a decision made not just on the basis of a new drug or a costly treatment but something that would help meet the needs of somebody who wants to live as long as they can” “I think life should be prolonged if that is the wish of the patient and the family”

Factor 3 “cost effectiveness, quality of life and patient values”

F3: “cost effectiveness, quality of life and patient values” NHS spending should aim to get the best value for money in terms of quality of life and life extension. Patients do not have a right to all treatments. High cost, low effect treatments should not be provided. Life for terminally ill patients should not be extended ‘for the sake of it’

F3: “cost effectiveness, quality of life and patient values”..but - depending on patients’ quality of life - treatments that extend life may be more valuable than treatments for other patients. A year of life is not of equal value to everyone. The importance of a good death.

“Because quality of life is what it is all about, life itself is not the be all and end all” “It's pretty un-contentious that ‘death with dignity’ is the really crucial thing” “I'm not sure I think there is a right to life because in that case we would be spending our entire worldwide research funds to keep people in a suspended state and that's not a quality of life and I think life is about quality as well as length”

Correlations between factors.. … and consensus and distinction between accounts F2 is not correlated with 1; 3 (-0.05 ; 0.09) F1 and F3 are highly correlated (0.67) 2 factor solution lost some interesting distinctions represented by F3.. F1 as naïve/ narrow utilitarianism; F3 is more nuanced Clustering of academic experts associated with F3

Characteristics of exemplars Factor 1 exemplars Academic 2 x Health economists Law Other Lived with cancer sufferer Health policy/charity 2 x Journalists MSP Factor 2 exemplars - Bereaved Nurse/charity Cancer survivor Journalist/cancer survivor Health care inspector/regulator in health Factor 3 exemplars Medical ethics 6 x Health economists Ethicist Dignitas member, bereaved partner

‘Experts’ compared with general public views Results (factors) based on 58 experts vs Results based on Q sorts with 250 general public Nothing missing. Less detail in general population – two factors only. Factor 2 strong/ unchanging. Factor 1/3 combined into one?

making policy… some issues Understanding societal views is one important aspect of policy making.. But: How ‘good’ are these views? How common are they? Who holds which views…